Post-IVIG -holding our breath

[LNN]

I know that as soon as I post this, everything will change. But while my 7 you son was getting IVIG this week, I was reading the posts about the horrible experiences others were having. Not only was my heart breaking for those kids and their parents, but my heart was in my own throat, selfishly worrying about our own situation. So I feel like I should chime in with a not so bad IVIG experience to give a little hope to anyone who has an upcoming treatment or is considering one.

 

Very briefly, my 7 yo son has had Pandas for almost 2 years. First year, we battled with local doctors, on and off abx, same story many parents have. Last May, we did the Cunningham test - CaM K 187. In June, we started long term abx, did prednisone and had the most amazing results. Had a T&A in July, did pex in Aug. Started to breathe again in Sept. But in the fall and winter, he had two episodes due to exposure to others with GABHS (tho nothing compared to what we dealt with pre-pex). Still, it seriously effected him in school and we lost him to the disease for a second year. This past spring, we decided we needed to do IVIG, which we finally did this past week.

 

After making him drink 48 oz for the three days leading up to it, Day one was very uneventful. The treatment was completed in 4 hours (weighs 60 pounds, 1.5 g/kg).We treated throughout with motrin and benadryl. My son was bored, but felt fine. We got ice cream afterward and hung out at the hotel eating more junk food. He felt a little tired at dinner. The second morning, he woke up with a moderate headache so I gave him motrin. We had breakfast and he started the 2nd treatment alert and anxious to get home. About 90 min into it, he started to feel nauseous and get a bad headache. So the nurse stopped the drip for awhile. We gave him some motrin and he rallied a bit. But then he went to sleep. We resumed the drip, but at the slowest rate. Awhile later, he developed a fever of 101. He slept for a long time and wouldn't eat or drink. He just wanted to sleep. After awhile, I realized this was a "Pandas fever".

 

4-5 times in the past 2 years, my son has developed fevers, sometimes as high as 102-104, that only respond to motrin and not tylenol. Once, it lasted 4 days. Other times, it's lasted as short as an hour, where usually around 5pm, he'd suddenly stop playing and lay down on the couch with a fever. Give him motrin and 20 minutes later he'd be back to normal. No underlying illness, no virus, nothing. I suspect it's got something to do with the body's reaction to inflammation. I know it's not common, but I have seen a few other parents have the same experience.

 

The nurse had held off giving him his afternoon dose of benadryl because she didn't want to make him more lethargic or nauseous. But ironically, at 4 pm when we were (finally) close to the end, she gave it to him and lo and behold, he rallied. The fever dropped to 100 and he sat up and asked for something to eat and drink. She was stunned. Had never seen anything like it. He then proceeded to talk everyone's ear off and tho still tired, he felt ok. Mild headache, no nausea.

 

So day 2 took us 9.5 hrs, not the 4 we'd hoped for. But we finished and were home a few hours later. I woke him up in the middle of the night for both motrin and benadryl and we continued that thru today, every 4-6 hours. Today he was a little subdued, a little emotional. But not bad. No headache. Ate normally. No fever. We still see the same OCD we saw pre-IVIG - he was in a moderate episode for the 2 weeks leading up to IVIG - again due to exposure. But nothing worse. Of course, it's only the first day home and I realize it may all change in a blink. In fact, I'll probably be worried if nothing happens (how perverse is that?).

 

IVIG was not fun. My son said he'd do pex again no problem but does not want to have to go thru IVIG again. But I wanted to be a reminder that every child will probably have a unique experience. You have to do what you feel is best for your child and try not to second guess yourself.

[bmom]

I hope all goes well. I believe your son was primarily tics and OCD was minor? Is that correct? Post pex did the tics return during exasperations or what symptoms returned? Thanks!

[trggirl]

Thank you for sharing your family's experience. I can't even begin to express how grateful I am for the stories shared on this forum.

 

What made your son dislike the experience so much esp. as compared to PEX?

[LNN]

Pre-pex, tics were by far our dominant issue, because they were so severe (motor and vocal). We also had medium OCD but used inositol, which seemed to really dampen it. Hard to say how bad the OCD would've gotten without it. Should've focused more on ERP but at the time, we were so overwhelmed with the tics, rages and cognitive fog that the OCD stuff took a back burner because it wasn't stopping him from doing things.

 

Post-pex, we haven't (yet?) seen any tics. One or two hums or one twitch at the start of swine flu - things that made me paralyzed with "Oh my God it's coming back" but for the past 10 months, never anything more than that (I am choosing my words carefully because if I say they're gone, you know I'll jinx it).

 

Either because pex changed the chemistry or because of maturity or because we worked so hard at CBT, the rages have also been immensely better for the post-pex episodes. We've seen flashes of intense anger, but he's either taken a deep breath, stomped off for a few minutes to recompose, or just used a flood of words to express his frustrations (usually with his sister, who annoys him on healthy days too).

 

Post-pex, our major issues have been OCD and brain fog. These two episodes were never been more than 50% as bad as pre-pex episodes. Maybe because the tics and rages aren't an issue, maybe because we put energy into ERP in the past year. Maybe because pex helped. Maybe because we had a knowledgeable doctor and we used prednisone to stop it early on. Probably all of the above.

 

But we can't be relying on prednisone every few months. So we decided to try IVIG. Why did my son prefer pex? A combination of things. First, he was asleep for the needle insertions for Pex. For IVIG, they had trouble with the first attempt at the needle in his hand and had to do a second one. He cried from the pain and he doesn't normally do this. For pex, Georgetown was well-equipped with entertainment. For IVIG, he was bored, despite my best attempts with dvds, internet games on nick.com, etc. And with IVIG, he had the headaches, nausea and fever. There was no pain with Pex. There was lots of pain with IVIG. With pex, I could watch him get better. With IVIG, I had to watch him hurt. But only time will tell if it was worth it.

[MomWithOCDSon]

Laura --

 

Though it was stressful and no fun, I'm glad to hear you and your DS came through IVIG in what seems to be relatively good shape! Will keep good thoughts coming your way during recovery in the weeks to come, and will be very interested in how your DS fares overall.

 

Hugs!

 

Nancy

[wornoutmom]

thanks for posting. Your experience sounds so similar to ours - just a bit delayed in the time frame...Did they give your son any IV hydration? It's so hard to watch them suffer when they've already gone through so much. I do wonder if some of these side effects are realted to PANDAS specifically, the high dose specifically, or just IVIG in general?. We're on day 6 now since the first day of treatment. We're still seeing some headache (treating with Motrin) and lack of energy (napping daily for a few hours) but he also managed to mow the lawn, play with neighbor kids in the back yard, and do some laughing. On the down side, he says his brain is bothering him again frequently (for him that means swirling thoughts and anxiety/ a need to know what the schedule will be over and over and over again) and has had a few meltdowns, but nothing as bad as I expected yet. So you might be able to stop holding your breath? It did break my heart to hear him say "you said this was supposed to make it better, not worse!". I'll be interested to hear how you guys are progressing with this - I wish nothing but the best for you!

[tpotter]

Tell him my son said that he hopes he feels better soon.

[NancyD]

Hey Laura,

 

I am thinking of you hoping the infusion will be successful!!!

 

Nancy